Epilepsy Talk

Hooray for Forums! | July 28, 2011

I never met anyone with epilepsy until I was 29. And that was a best friend of my husband’s.  (Which may explain why my husband didn’t freak out when I had a seizure on our first date!)

That was it. Beginning and end. Until 2009, when I began participating in other forums (I didn’t even know what a “forum” was!) and started EpilepsyTalk.com.

Now my life is so much richer. Because of you. Not just because we can help, support and advise one another with “seizure disorders.”

But because there are so many people who are so WONDERFUL whom also happen to have epilepsy, too.

And so, I thank all of you.



  1. Hi Phylis, it was about 7 years ago when I discovered Epilepsy Support groups. Then I was invited to join a forum. I had never heard of one, either. I like both.

    Then, I decided to join a Diabetes forum. Now, I am in 3 forums and 2 support groups.

    I have met and have email addresses of a good many friends that I have met over the past 7 years.


    Comment by Ruth Brown — July 28, 2011 @ 11:57 AM

  2. Hi Ruth,

    What’s the diffverence between a support group and a forum?


    Comment by phylis feiner johnson — July 28, 2011 @ 2:00 PM

  3. Hi Phylis,

    I had heard of Seizures when I was a pre-teen. Once! But I was 29 when I learned my Sis had Seizures. Although I never witnessed one. I just had to ‘hold down the fort’ after she had one. All Nocturnal Events. In over 40 Yrs I have only met 1 other person. In Person. 🙂

    It was 1993, when I found WebMD/Epland. Shortly after that, I discovered the Epilepsy Foundation (which I had only seen fliers of & ignored) & epilepsy.com. But, Epland was the Place for me. 🙂 I have only ‘expanded my wings’ to 2 other groups w/in the past Yr. Well, 3 if ya include my COPD group. 🙂

    My Idea of the difference between Support groups & forums: Forums are used for Debates in which anyone can participate. Support groups have Debates, also. But, mainly, they are places where we can share our worries/concerns. Our successes & setbacks. Where we can meet & Make new Friends w/ similar concerns. A Place where we can Reach Out to others & be enfolded in ‘Virtual’ Cyberspace Hugs. 🙂

    I’m Glad you formed your own ‘unique’ site. It makes me Proud to Know Ya! HUGS! I’m Glad to be Your Friend & Confidante. 🙂 I Appreciate your Wisdom & your Support! HUGS!

    Love Candi


    Comment by candi — July 30, 2011 @ 5:53 PM

  4. The groups are interesting because you do not feel alone. People have more or less challenges. It is interesting to read or contribute.

    Phylis you are great in starting this forum!


    Comment by Toni Robison — August 1, 2011 @ 6:32 PM

  5. Thanks. Well everybody needs to talk and there aren’t a whole lot of people to talk to.

    Besides, I love the little family (which is steadily getting bigger) that we’ve created!


    Comment by Phylis Feiner Johnson — August 1, 2011 @ 7:34 PM

  6. I have learned a lot from the support groups and forums. I have made many friends, as well.

    I have learned about epilepsy, diabetes and now I am in an Alzheimer’s support group at WebMD.


    Comment by Ruth Brown — August 1, 2011 @ 7:36 PM

  7. Hi Ruth, If interested here is another site. W/ support groups for Any of your ‘ails’. 🙂 You know what I say “Never can have tooooo many Opinions/Advice/Tips or too Much of the Newest Info”. 🙂


    Love Candi


    Comment by candi — August 2, 2011 @ 1:41 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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